A History of Suffering and Misunderstanding

The first reference to the disease was in 1550 B.C., by 4000 B.C. many were infected.

Those afflicted were made to wear clothing that identified them-

Some were made to wear bells so as to announce their presence-

Historically, Biblical perceptions were that those “touched” by the disease were unclean, being punished by God for sinful behaviors or heretics.  During the Middle Ages the social perception was one of fear and often hostility.  These individuals were dirty, untrustworthy and morally corrupt.  Banishment or segregation from society was common place.  By the time the Colonial Era rolled around, isolating the “diseased” for fear of spreading infection was the norm.

We’re not talking Jews, Witches, Adulterers, Gypsies, Registrants, or any of those groups that have long been persecuted and ostracized by society.

We’re talking Lepers.

For thousands of years they were considered the scourge of society.  Symptoms of leprosy can lie dormant in an individual for 5-20 years. When symptoms finally present themselves, they affect the skin, nose, eyes and peripheral nerves.  Damage to the peripheral nerves often caused numbness and loss of sensation in limbs which resulted in injuries and wounds to those areas going unnoticed.  Instead of being forced to wear large yellow stars, scarlet letter A’s or register on a Sex Offender Registry, the open weeping sores on their skin and amputated limbs became the face of leprosy.  

In 2018 we hardly ever hear the term “leper” unless it’s used by registrants themselves to describe their isolation or writers who struggle to find the correct terminology when referring to the way registrants are ostracized by society.

Decades of research have proven that leprosy or the more medically correct term, Hansen’s Disease, is not as highly contagious as we once thought it was.  It is a disease caused by infection with the bacteriums Mycobacterium leprae or Mycobacterium lepromatosis, it’s means of transmission is airborne, through coughs and sneezes. You’re unlikely to contract leprosy by merely living in the vicinity of someone with the disease.   A recent genetic study by the National Hansen’s Disease Program found that armadillo’s may be a source of infection in the Southern USA.

In 1985 there were 5.2 million people with leprosy, by 1995 that number was down to 805,000. In 1990 the numbers were further reduced to 753,000 and by the end of 2016 it was only 173,358

This disease which for thousands of years forced people into hiding, sent people off to live in the mountains or on islands where they couldn’t “contaminate” the rest of the “clean” folks, turned out, after all that suffering and misunderstanding, to be highly treatable, even curable.

Once it was found that the disease could be easily treated with multi-drug therapy (which incidently is provided free of charge by the World Health Organization), society’s perception of those affected by  the disease began to change as well.

No longer did we view those affected by leprosy as a scourge, unclean, impoverished, untouchable, disabled or sinners.  Now instead of only seeing the disease, we saw the people affected by it, mothers, fathers, grandparents, children who had not “leprosy” but Hansen’s Disease, people who could be treated, cured and go on to live normal lives without loss of life and limb. These people were no longer considered the “scourge of society” but people that society cared about, people who deserved the necessary treatment for their affliction, regardless of cost, so they could continue being productive members of society. When educated and the irrational fears withdrawn, society began to tend to these people rather than shun them.

No longer are persons affected by this disease called by the derrogatory name “lepers.”  We don’t banish people with this disease to colonies on islands  or to mountainous areas to be taken in and cared for by charitable religious orders. In the USA the stigma of having leprosy has died down, maybe because now we refer to it by it’s medical name, Hansen’s Disease and Hansen’s Disease never had a stigma to begin with. In countries that have the highest rates of the disease, India, Brazil and Indonesia, people unfortunately are still ostracized, they lose families, friends and employment. Many are left on their own to fend for themselves. They are isolated, disgarded, considered “dangerous”, “untouchable” and “untreatable.”

Does any of this sound familiar?

It’s taken centuries for their stigma to subside.

As a society, today, we’re much smarter, more educated and we’re not willing to wait centuries for the stigma hanging over registrants to subside.

The World Health Organization has what they refer to as a Global Leprosy Strategy which includes 3 core pillars.  The 3rd pillar is to “Stop Discrimination and Promote Inclusion.”  W.H.O. tries to address all forms of discrimination and stigma and to empower those affected by leprosy to participate in available services. They educate and involve communities to improve available services and to promote access to social and financial support and rehabilitation services.  And, they work to abolish the discriminatory laws and promote policies facilitating inclusion of “all” those affected by leprosy. 

We need that!  A Global Registrant Strategy with a pillar to “Stop Discrimination and Promote Inclusion” of registrants.

Much like with leprosy “before” public education and treatment, the number of registrants continues to grow. 

Today the number of registrants is somewhere in the area of 900,000 and growing everyday and their “treatment” isn’t free, they pay for it themselves.

Imagine how the numbers would decrease if the public were educated regarding the truths about the registry, if they saw the “people” behind the sex offender label. What if the public understood about all the benign offenses that could cause them or someone they love to be put on the registry. What if they were told the truth about the low re-offense rate of registrants. What if the public was made aware of the real facts regarding residency restrictions, how there has never been any data to show that those residential boundary maps ever made anyone safer. What if the public knew about all the myths surrounding sex offenders/registrants.

Imagine if the public knew they had been blatantly lied to or force-fed half truths about registrants by politicians and the media all these years.

John Q. Public doesn’t take kindly to being lied to.

If everyone of us does our part, in whatever capacity we can, WAR and other groups like it can do for registrants what the World Health Organization did for those who were considered “lepers.”

We can end the stigma in our lifetime.

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